I haven’t been told anything which is why I’m reaching out and reading online articles! I’m very upset! Three years ago was told fatty liver I assumed because I was 60lb overweight but my whole family brothers and sister 20 years older and much heavier none of them have this. Then I was told autoimmune disease attacked my liver, no one ever mentioned diet or wt loss. My husband had cancer and while taking care of him I lost 45lbs. I just started my own diet no red meat, greasy food, salt, sugars all cut back. So I lost another 10 lb from this in past month. My GI put me on Ursodiol 5 months ago but she just quit working and referred me to hepatologist Dr who I see on 10/14. I have never smoked, drank, drugs, no out of marriage affairs. I take meds for BP, thyroid, baby aspirin, stool softener, VitD, and calcium when I remember it, IB for backache occasionaly.
@gema98, I am happy that you will be seeing a hepatologist in a couple of weeks. I think you will be introduced to a wealth of information that pertains to you and your diagnosis. I can already see that you are one who is ready to advocate for yourself by seeking valid information and by asking questions.
Since you mentioned fatty liver disease, here are a couple of articles from the Mayo Connect Newsfeed. I personally like the suggestions because they are easy for me to use when I cook for me and my husband.
-Blogs>Transplant>Sugar-Sweetened Beverage Consumption Increases NAFLD Risk https://connect.mayoclinic.org/blog/transplant/newsfeed-post/sugar-sweetened-beverage-consumption-increases-nafld-risk/
-Blogs>Transplant>NASH Patients: Add These Foods to Your Diet https://connect.mayoclinic.org/blog/transplant/newsfeed-post/nash-patients-add-these-foods-to-your-diet/
Gema, I am going to be sending you an invite to a discussion about PBC in a Transplant discussion group. Please do not be alarmed that it is in the Transplant section. I think that it is a good place to ask your PBC questions where the patients who have experience with PBC will see your questions more readily.
Hope to meet you there
I haven’t been told anything which is why I’m reaching out and reading online articles! I’m very upset! Three years ago was told fatty liver I assumed because I was 60lb overweight but my whole family brothers and sister 20 years older and much heavier none of them have this. Then I was told autoimmune disease attacked my liver, no one ever mentioned diet or wt loss. My husband had cancer and while taking care of him I lost 45lbs. I just started my own diet no red meat, greasy food, salt, sugars all cut back. So I lost another 10 lb from this in past month. My GI put me on Ursodiol 5 months ago but she just quit working and referred me to hepatologist Dr who I see on 10/14. I have never smoked, drank, drugs, no out of marriage affairs. I take meds for BP, thyroid, baby aspirin, stool softener, VitD, and calcium when I remember it, IB for backache occasionaly.
Hello @gema98, I’m very sorry about your recent diagnosis, PBC is indeed worrisome. Although people can live for a number of years before becoming too ill with liver cirrhosis. Particularly if ursodial works for them. There is no clear reason or correlation as to why people, mostly women, older than 50, come down with PBC. There are often triggers. I was reasonably healthy, fit, ate well, not on any medications, etc. I’ve read bacterial infections can be a trigger. I had giardiasis four times, so this may had triggered it in me.
Unfortunately, just after I turned 60 I was diagnosed with stage 3 liver cirrhosis. I was sent to a liver specialist who found it was caused by PBC. I had complained to my primary for years about minor feet numbness and severe itching, but it was ignored. I had a liver transplant last year.
Do you know the extent of your liver disease? Are you seeing a liver specialist? There are a number of dietary precautions you should be informed about. Also, your specialist will send you to get an endoscopy done, again depending on the extent of your liver damage, to check for esophageal varices (blood clots).
Please let me know what you find out from your liver doctor. I’m happy to answer any questions about my experience. My best wishes and stay positive!
Hello @gema98, I’m very sorry about your recent diagnosis, PBC is indeed worrisome. Although people can live for a number of years before becoming too ill with liver cirrhosis. Particularly if ursodial works for them. There is no clear reason or correlation as to why people, mostly women, older than 50, come down with PBC. There are often triggers. I was reasonably healthy, fit, ate well, not on any medications, etc. I’ve read bacterial infections can be a trigger. I had giardiasis four times, so this may had triggered it in me.
Unfortunately, just after I turned 60 I was diagnosed with stage 3 liver cirrhosis. I was sent to a liver specialist who found it was caused by PBC. I had complained to my primary for years about minor feet numbness and severe itching, but it was ignored. I had a liver transplant last year.
Do you know the extent of your liver disease? Are you seeing a liver specialist? There are a number of dietary precautions you should be informed about. Also, your specialist will send you to get an endoscopy done, again depending on the extent of your liver damage, to check for esophageal varices (blood clots).
Please let me know what you find out from your liver doctor. I’m happy to answer any questions about my experience. My best wishes and stay positive!
Thank you for the information, I did have an endoscopy this morning and few more tests the next 2 days. I don’t see the hepatologist until the 14th so will know more then. Best wishes also to you!
@gema98, I am happy that you will be seeing a hepatologist in a couple of weeks. I think you will be introduced to a wealth of information that pertains to you and your diagnosis. I can already see that you are one who is ready to advocate for yourself by seeking valid information and by asking questions.
Since you mentioned fatty liver disease, here are a couple of articles from the Mayo Connect Newsfeed. I personally like the suggestions because they are easy for me to use when I cook for me and my husband.
-Blogs>Transplant>Sugar-Sweetened Beverage Consumption Increases NAFLD Risk https://connect.mayoclinic.org/blog/transplant/newsfeed-post/sugar-sweetened-beverage-consumption-increases-nafld-risk/
-Blogs>Transplant>NASH Patients: Add These Foods to Your Diet https://connect.mayoclinic.org/blog/transplant/newsfeed-post/nash-patients-add-these-foods-to-your-diet/
Gema, I am going to be sending you an invite to a discussion about PBC in a Transplant discussion group. Please do not be alarmed that it is in the Transplant section. I think that it is a good place to ask your PBC questions where the patients who have experience with PBC will see your questions more readily.
Hope to meet you there
Thank you for the information, I did have an endoscopy this morning and few more tests the next 2 days. I don’t see the hepatologist until the 14th so will know more then. Best wishes also to you!
Dr said EGD was good but discharge paperwork says erythema compatible to gastritis! Otherwise my blood phosphate is lower at an 8 and Dr seemed very happy. Next appointment 6 months.
Hello @gema98, I’m very sorry about your recent diagnosis, PBC is indeed worrisome. Although people can live for a number of years before becoming too ill with liver cirrhosis. Particularly if ursodial works for them. There is no clear reason or correlation as to why people, mostly women, older than 50, come down with PBC. There are often triggers. I was reasonably healthy, fit, ate well, not on any medications, etc. I’ve read bacterial infections can be a trigger. I had giardiasis four times, so this may had triggered it in me.
Unfortunately, just after I turned 60 I was diagnosed with stage 3 liver cirrhosis. I was sent to a liver specialist who found it was caused by PBC. I had complained to my primary for years about minor feet numbness and severe itching, but it was ignored. I had a liver transplant last year.
Do you know the extent of your liver disease? Are you seeing a liver specialist? There are a number of dietary precautions you should be informed about. Also, your specialist will send you to get an endoscopy done, again depending on the extent of your liver damage, to check for esophageal varices (blood clots).
Please let me know what you find out from your liver doctor. I’m happy to answer any questions about my experience. My best wishes and stay positive!
My EGD seemed ok to the hepatologist, from all tests he said I am at an 8 on a chart with the PBC. I am curious about my food and think I need a dietician to understand what to eat. What advice have you been given? Hope you are doing well!
My EGD seemed ok to the hepatologist, from all tests he said I am at an 8 on a chart with the PBC. I am curious about my food and think I need a dietician to understand what to eat. What advice have you been given? Hope you are doing well!
I’m glad your labs aren’t too bad. I don’t know about the PBC chart, did your doctor review the chart levels with you? Are you taking ursodial?
Unfortunately by the time I was diagnosed with PBC, I was in stage 3 liver cirrhosis. But, I assume adopting similar practices can benefit you as well. The main thing is to eat an overall healthy diet, high in fiber, and good low fat protein. Avoiding high salt/sodium foods, high fat foods, and processed foods is optimal. Maintaining enough calories for proper weight levels for your body, but to not gain too much weight. I was low in magnesium due to liver disease, so I’d recommend you stay on top of your labs and discuss these with your liver specialist. I’m sure you can get referred to a dietician who knows about appropriate diets for liver disease.
Also, avoid any raw fish and under cooked foods (eggs, meat) due to high bacterial risk. Adopting stringent food safety practices is essential. Paying attention to calcium and precautions against osteoporosis is one thing about which I wish I had been more aware. I have a high level of osteoporosis now due to liver disease. Definitely avoid all alcohol. You might also recommend avoiding ibuprofen and other medications known to be hard on the liver. I used liver support supplements, including milk thistle, elderberry, vitamin C. You might ask your doctor about these. Mine thought they were fine. You mainly want to keep your body as healthy, fit, and strong as possible. Walking and exercise are important as well.
Have you started itching? A good natural lotion is good. Benadryl or other ointment can help if it’s really bad. You might also ask your liver specialist about compression socks. My ankles and feet swelled heavily. I liked Bombas compression socks…very comfortable. Stylish is good when you have to wear them in warmer months!
I recently scheduled a tour at my local grocery story, hosted by the store's dietician. The dietician took me around the store and showed me the brands that are 'heart healthy', high in fiber, and to reduce cholesterol. I'd recommend that you try that at your local grocery.
I’m glad your labs aren’t too bad. I don’t know about the PBC chart, did your doctor review the chart levels with you? Are you taking ursodial?
Unfortunately by the time I was diagnosed with PBC, I was in stage 3 liver cirrhosis. But, I assume adopting similar practices can benefit you as well. The main thing is to eat an overall healthy diet, high in fiber, and good low fat protein. Avoiding high salt/sodium foods, high fat foods, and processed foods is optimal. Maintaining enough calories for proper weight levels for your body, but to not gain too much weight. I was low in magnesium due to liver disease, so I’d recommend you stay on top of your labs and discuss these with your liver specialist. I’m sure you can get referred to a dietician who knows about appropriate diets for liver disease.
Also, avoid any raw fish and under cooked foods (eggs, meat) due to high bacterial risk. Adopting stringent food safety practices is essential. Paying attention to calcium and precautions against osteoporosis is one thing about which I wish I had been more aware. I have a high level of osteoporosis now due to liver disease. Definitely avoid all alcohol. You might also recommend avoiding ibuprofen and other medications known to be hard on the liver. I used liver support supplements, including milk thistle, elderberry, vitamin C. You might ask your doctor about these. Mine thought they were fine. You mainly want to keep your body as healthy, fit, and strong as possible. Walking and exercise are important as well.
Have you started itching? A good natural lotion is good. Benadryl or other ointment can help if it’s really bad. You might also ask your liver specialist about compression socks. My ankles and feet swelled heavily. I liked Bombas compression socks…very comfortable. Stylish is good when you have to wear them in warmer months!
Thank you Athena you have given me more information than any of the doctors. Yes I am taking Ursodiol, trying to stay away from fats, salt, sugar as I did read that. I have broken 3 bones in past 14 years and supposed to take vit D and calcium but usually forget it. I love milk but switched to Almond drink hoping it is healthier. I had some itching few months ago and thought because I bought Oil Olay shower soap, it went away but maybe be because I started Ursodiol around that time. Thank You for the links also! Please take care and let me know how you are doing also. Sincerely, Gail
(GeMa is what my 1st grandchild started calling me so they all do 😊)
@gema98, I am happy that you will be seeing a hepatologist in a couple of weeks. I think you will be introduced to a wealth of information that pertains to you and your diagnosis. I can already see that you are one who is ready to advocate for yourself by seeking valid information and by asking questions.
Since you mentioned fatty liver disease, here are a couple of articles from the Mayo Connect Newsfeed. I personally like the suggestions because they are easy for me to use when I cook for me and my husband.
-Blogs>Transplant>Sugar-Sweetened Beverage Consumption Increases NAFLD Risk
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/sugar-sweetened-beverage-consumption-increases-nafld-risk/
-Blogs>Transplant>NASH Patients: Add These Foods to Your Diet
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/nash-patients-add-these-foods-to-your-diet/
Gema, I am going to be sending you an invite to a discussion about PBC in a Transplant discussion group. Please do not be alarmed that it is in the Transplant section. I think that it is a good place to ask your PBC questions where the patients who have experience with PBC will see your questions more readily.
Hope to meet you there
Hello @gema98, I’m very sorry about your recent diagnosis, PBC is indeed worrisome. Although people can live for a number of years before becoming too ill with liver cirrhosis. Particularly if ursodial works for them. There is no clear reason or correlation as to why people, mostly women, older than 50, come down with PBC. There are often triggers. I was reasonably healthy, fit, ate well, not on any medications, etc. I’ve read bacterial infections can be a trigger. I had giardiasis four times, so this may had triggered it in me.
Unfortunately, just after I turned 60 I was diagnosed with stage 3 liver cirrhosis. I was sent to a liver specialist who found it was caused by PBC. I had complained to my primary for years about minor feet numbness and severe itching, but it was ignored. I had a liver transplant last year.
Do you know the extent of your liver disease? Are you seeing a liver specialist? There are a number of dietary precautions you should be informed about. Also, your specialist will send you to get an endoscopy done, again depending on the extent of your liver damage, to check for esophageal varices (blood clots).
Please let me know what you find out from your liver doctor. I’m happy to answer any questions about my experience. My best wishes and stay positive!
Thank you for the information, I did have an endoscopy this morning and few more tests the next 2 days. I don’t see the hepatologist until the 14th so will know more then. Best wishes also to you!
Thank you very much, having tests this week and hoping for better news than what I have imagined.
You’re on the right path. Good luck with your tests and please let us know what your hepatologist says.
Dr said EGD was good but discharge paperwork says erythema compatible to gastritis! Otherwise my blood phosphate is lower at an 8 and Dr seemed very happy. Next appointment 6 months.
My EGD seemed ok to the hepatologist, from all tests he said I am at an 8 on a chart with the PBC. I am curious about my food and think I need a dietician to understand what to eat. What advice have you been given? Hope you are doing well!
I’m glad your labs aren’t too bad. I don’t know about the PBC chart, did your doctor review the chart levels with you? Are you taking ursodial?
Unfortunately by the time I was diagnosed with PBC, I was in stage 3 liver cirrhosis. But, I assume adopting similar practices can benefit you as well. The main thing is to eat an overall healthy diet, high in fiber, and good low fat protein. Avoiding high salt/sodium foods, high fat foods, and processed foods is optimal. Maintaining enough calories for proper weight levels for your body, but to not gain too much weight. I was low in magnesium due to liver disease, so I’d recommend you stay on top of your labs and discuss these with your liver specialist. I’m sure you can get referred to a dietician who knows about appropriate diets for liver disease.
Also, avoid any raw fish and under cooked foods (eggs, meat) due to high bacterial risk. Adopting stringent food safety practices is essential. Paying attention to calcium and precautions against osteoporosis is one thing about which I wish I had been more aware. I have a high level of osteoporosis now due to liver disease. Definitely avoid all alcohol. You might also recommend avoiding ibuprofen and other medications known to be hard on the liver. I used liver support supplements, including milk thistle, elderberry, vitamin C. You might ask your doctor about these. Mine thought they were fine. You mainly want to keep your body as healthy, fit, and strong as possible. Walking and exercise are important as well.
Have you started itching? A good natural lotion is good. Benadryl or other ointment can help if it’s really bad. You might also ask your liver specialist about compression socks. My ankles and feet swelled heavily. I liked Bombas compression socks…very comfortable. Stylish is good when you have to wear them in warmer months!
Here’s a couple helpful links:
https://pbcers.org/eathealty/
https://liverfoundation.org/primary-biliary-cholangitis-diet-eat-avoid/
https://www.niddk.nih.gov/health-information/liver-disease/primary-biliary-cholangitis/eating-diet-nutrition
Let me know how you’re doing. Stay safe! Athena
I recently scheduled a tour at my local grocery story, hosted by the store's dietician. The dietician took me around the store and showed me the brands that are 'heart healthy', high in fiber, and to reduce cholesterol. I'd recommend that you try that at your local grocery.
Thank you Athena you have given me more information than any of the doctors. Yes I am taking Ursodiol, trying to stay away from fats, salt, sugar as I did read that. I have broken 3 bones in past 14 years and supposed to take vit D and calcium but usually forget it. I love milk but switched to Almond drink hoping it is healthier. I had some itching few months ago and thought because I bought Oil Olay shower soap, it went away but maybe be because I started Ursodiol around that time. Thank You for the links also! Please take care and let me know how you are doing also. Sincerely, Gail
(GeMa is what my 1st grandchild started calling me so they all do 😊)